Looking at Self-Stimulation in the Pursuit of Leisure or I'm Okay, You
Have a Mannerism

Editor's note: This article has been reprinted once, but a renewed discussion
on the topic seems important. In light of the many questions we have had
from parents and professionals about self-stimulatory behavior, we felt that
it was time to reprint this article again.

I would like to thank Jim Durkel, Craig Axelrod, Gigi Newton, David Wiley
and Stacy Shafer for taking their time to discuss the topics of leisure and
self-stimulation with Robbie and me when we first set out to write it. I
began with the intention of writing a simple article on leisure. I had no
idea I would end with an article on self-stimulation. I hope this article
shows some of the prejudice that seems to exist in our thinking about this
topic. We have to understand what a normal human activity self-stimulation
is and address these behaviors accordingly. Because this topic is so complex
I hope to provide more information about self-stimulation in a future edition.

I would also like to thank Gretchen Stone, Ann Silverrain, and Barbara
Bellemo-Edusei for their contributions to this work. These women, along with
Robbie, formed a study group back in 1985 after attending a conference in
Tallahassee conducted by Dr. Jan van Dijk. Challenged by both the information
and the values conveyed by van Dijk in discussing children with deafblindness,
they worked to digest rather complex information about the human brain, the
nervous system, and the implications this information has in teaching children
with deafblindness. Their discussions, and the papers generated as a result
of this study group, were invaluable to me in beginning to understanding
the effects of sensory deprivation on the central nervous system and how
it relates to the way children with deafblindness respond to the world.

Leisure time, the time free from work or duties, is important to all human
beings. Leisure time is the time for doing something that will relax us or
energize us, so that we can renew ourselves to face the demands of our lives.
It is something we require as much as food or sleep to stay healthy and sane.

We all have different ways of spending our leisure time. What might be a leisure
activity for me (reading a mystery) might not be leisure to you. We know and
accept this about each other. When considering "leisure skills" for
children with deafblindness, however, we often focus on activities which do
not relax or positively energize them. We spend their time getting them to
participate in "play work" as one young man with deafblindness terms
it. Learning to play games, participate in arts and sports activities, or other
pursuits as a part of their educational programming may be beneficial for children
in many ways, but these activities don't necessarily meet their needs for "leisure".

The type of activities that often do provide relaxation or amusement for these
individuals includes behaviors that we find unacceptable: flicking your hand
in front of your eyes, pulling threads out of your clothes, making repetitive
sounds, etc. These behaviors are considered self-stimulation, and as such,
are often perceived negatively because they do not look "normal," may
interfere with learning and can often become self-injurious. Yet these behaviors
serve a positive purpose for these individuals as well.

Changing our perception of these self-stimulation behaviors may be the most
reasonable course to take in addressing this issue, especially if this change
of perception also helps us find ways to give more information to the child
who is deafblind and consequently reduce his need to find stimulation on his
own. These behaviors may also hold the key to information about his/her personal
preferences, which we may tap into to select more appropriate choices for typical
leisure options.

Stimulating Experiences

Most of our "leisure activities" are nothing more than self-stimulation
behaviors that have become highly ritualized over time and made socially acceptable.
There is nothing intrinsically valuable or reasonable about leisure pursuits
such as bungee jumping, playing cards, dancing, playing video games, listening
to music, smoking, etc.

People participate in these different activities because they find them to
be pleasurable and because the activities alter their physical state. Each
activity provides us with a particular type of sensory input (see
Chart). There is not necessarily a great difference in so-called self-stimulation
behaviors and some of these activities, beyond the fact that some are more
socially acceptable and "normal" in appearance than others. For example,
what is really so different about banging a table and banging a drum, rocking
to music and rocking to silence, making repetitive sounds and imitating bird
calls, spinning for no apparent reason and spinning in a ride at the amusement
park?

Each day, a good portion of our energy is spent in self-stimulation. Just
look at the people around you. You are in a room with your family watching
television or at a meeting with a group of co-workers. Although you are seemingly
engaged in the same activity, your daughter or colleague is playing with her
hair. Your son or your office-mate is shaking his leg and tapping out rhythms
on the arm of the chair. Your husband is flipping channels with the remote
or your boss is flipping papers. If you ask them what they were doing, they
would likely reply that they are watching television or having an important
meeting. They would be less likely to say they were channel surfing, twirling
their hair, practicing the drum part for "Wipe Out," or fanning their
papers.

Each of us, even those of us with more intact central nervous systems, tolerates
differing degrees of stimulation. Look at the difference in the preferred musical
tastes (and intensity levels) between the teenager and the forty-year-old.
Although most teenagers enjoy megawatt rock concert with all the trimmings,
most adults are more inclined to seek out softer music or silence in a dimly
lit room. In the same way, children with deafblindness vary in the amount and
intensity of stimulation they need.

If we come to accept that self-stimulation is an important and valid activity
for individuals without disabilities, then we must begin to revise our thinking
about addressing self-stimulatory behaviors in individuals with deafblindness.

Can this behavior be stopped?

In looking for the answer to this question, first take a look at yourself.
Try this little exercise. Identify one of your own deeply cherished self-stimulatory
behaviors such as cracking your knuckles, humming, sliding a charm on your
necklace, etc. Try to keep track of how many times during the course of a 24
hour period you engage in this behavior. Then spend the next 24 hours refraining
from this behavior. If you succeed, then try to extinguish that particular
behavior for a year. Stop this behavior under all kinds of circumstances: times
of stress, times of idleness, etc. Once you have completed this exercise, answer
the question for yourself. Your answer will either be a resounding "no" or
a "maybe, if" depending on your particular success in completing
the exercise.

Children with deafblindness (just like you and me) participate in self-stimulatory
behavior to calm, to energize, to get feedback, etc. Most of the time you can't
completely extinguish the behavior, and perhaps you shouldn't, because it does
serve a purpose.

Can this behavior be redirected?

Most parents find that their child is more likely to participate in self-stimulatory
behaviors when he/she is idle or stressed. Interacting with your child in some
way may break up the self-stimulation. If the behavior appears in response
to stress, finding ways to help him relax (e.g., massage, being wrapped up
in a quilt, etc.) may reduce the amount of time spent in the behavior you find
inappropriate or harmful. If your child is left alone, however, it is likely
he/she will re-engage in this activity as soon as the opportunity presents
itself.

Can this behavior be "contained" by allowing it in certain locations
or at certain times?

Some behaviors may present problems because they are considered socially inappropriate.
Those of us who are smokers have learned to refrain from our favorite self-stimulation
behavior on flights, but we all know exactly where to go in the airport for
that last cigarette before the flight leaves.

With some effort, many children can learn to remove themselves to their bedroom
or a private place when engaging in self-stimulation that is not considered
socially acceptable. Using calendar symbols to represent this favored activity
and scheduling the activity as part of the child's day may help the child refrain
from this particular self-stimulation behavior for increasingly longer periods
of time and stay involved in other kinds of activities.

Chart - Our brain seeks out stimulation
through the channels of our senses. Each of us seeks out this stimulation in
a variety of ways. Society accepts some of these behaviors without question,
yet feels very differently about others. In some cases this acceptance seems
to be arbitrary. The chart shows examples of how individuals typically fulfill
this craving for stimulation and how some self-stimulation behaviors of children
with deafblindness parallel these behaviors.

Pulling hair, lying in front of the air vent,
slapping face/ear, playing with spit, rubbing head

Proprioceptive: Information about
the relative positions of parts of the body. This information comes through
sensations arising in the muscles, joints, ligaments, and receptors associated
with the bones.

Vestibular: Information received through
receptors in the inner ear which enables us to detect motion, especially
acceleration and deceleration. Closely tied to the visual system which
provides information to the vestibule located in the inner ear.

Can this behavior be modified or expanded into more "socially acceptable" self-stimulatory
behaviors?

Self-stimulatory behaviors are valuable because they tell you how your child
takes in information. If your child likes to burrow down inside the cushions
of the couch, be held or hugged a lot, enjoys massage, etc., you can assume
that he is motivated by information he receives proprioceptively. If your child
likes to vocalize, listen to music, or bang things together next to his ear,
you can assume he is motivated by information he receives auditorially.

These behaviors can be used as a way to explore the individual's preferred
sensory channels for receiving information from the world. With this information
we may identify preferred sensory experiences around which we can develop more "mainstream" leisure
activities that our children will also come to view as "leisure." For
example, if a child enjoys the visual sensation of lights we can find age-appropriate
toys that might be motivating to him. In addition to familiar toys such as
Lite-Brite, consider lava lamps, continuous wave machines, lighted drafting
tables for drawing, and even some Nintendo-type games. You might also consider
extracurricular events such as visiting arcades, decorating with lights for
appropriate holidays or lying in a hammock under a tree watching the play of
light through the leaves.

Take time to observe the types of self-stimulation that your child participates
in and when this behavior occurs. Watch him/her and make notes about what you
see and when you see it. Then try to see if there is any pattern to these behaviors
that would give you insight to the type or types of stimulation he/she prefers
and the purpose it serves. At the same time note what types of activities he/she
finds aversive.

When you have a good understanding about his/her preferences, begin to brainstorm
ways that you can offer other stimulatory activities, modify or expand on the
preferred self-stimulation. Ask for help from your child's teacher, physical
therapist, occupational therapist, and others. Look at children of the same
age, and try to find toys or activities that may make the self-stimulatory
behavior appear more "normal."

Sometimes your child's favorite self-stimulation activity can be modified
or expanded in a way that will make it more socially acceptable. For example,
everyone knows the "nail-biters," but do you recognize them when
they become "the manicurists?" Several of my friends substitute the
more acceptable behavior of nail care for their favorite activity of nail biting.
They carry a complete manicure set with them at all times and can often be
seen in meetings quietly filing or clipping a nail. They buff, cream, and polish.
They examine their nails for chips, snags, splits. They are rewarded by others
who admire their efforts instead of being held in low esteem as nervous nail-biter
types.

You should realize, however, that generally your child will need support from
you to seek out these more acceptable behaviors. Their first preference will
usually be for the behavior they have developed on their own.

Can the environment be engineered to make this behavior safer if the behavior
is detrimental to the child or those around him/her?

People who like to jump off things are great examples of engineering the environment
to make a dangerous self-stimulation behavior safer. These folks (skate-boarders,
skydivers, skiers, etc.) have developed elaborate ways of placing themselves
in extremely dangerous activities and surviving. We have industries based on
protective clothing and equipment that will allow them to hurl themselves through
space and make a safe landing.

Frequently, the best you can do is provide protection for children who put
themselves in danger of bodily harm by participating in self-stimulation activities
that are excessive to the point of creating physical danger to themselves or
others. Splints, helmets and other devices sometimes must be used temporarily
to protect the child and others around him/her.

In addition to providing protection from the effects of the behavior, it is
important to look at the cause of the behavior. Often times these behaviors
erupt in response to real physical problems that the child is not capable of
communicating to you. These behaviors might indicate pain or decrease of sensation,
as in the case of retina detachment or ear infections. It's very important
to the health and safety of the child to seek out appropriate medical examinations
when this type of behavior emerges or escalates.

Emotional and environmental conditions may also provoke increases in self-injurious
behaviors. One individual I knew exhibited a dramatic increase in self-stimulatory
behavior after the death of her father. The amount and intensity of the behavior
posed concerns for her safety and the safety of others. Since there was no
physiological basis for her behavior, the family spent a lot of time with her
looking at pictures of her dad, going to the cemetery, and trying to participate
in activities that were associated with her father. After a period of time,
the behaviors decreased to levels that were comparable with the period before
her father's death.

Changes in schedules, moves to new environments, and so forth, can also bring
about increases in self-stimulatory behavior. Helping the child anticipate
these changes, and providing as much consistency as possible through familiar
routines during times of change, may help reduce this type of behavior.

Conclusion

Like you and I, children with deafblindness have a need to participate in
self-stimulatory activities. Because their behaviors appear very different
from our own and can interfere with learning or become dangerous, they are
viewed negatively by many people. Changing our perception about these behaviors
may help us respond to them in a better way.

There are a number of ways to intervene. Keep the child involved with others
during the course of the day. Help him/her contain the behavior, or engineer
the environment to make the behavior safer. Schedule times in the day for your
child to engage in the preferred activity. Look at ways the behavior can be
adapted, so it will appear more "normal." Use the information these
behaviors tell you about your child's preferred channels of sensory input,
to develop recreational and social pursuits that may be enjoyable for him/her,
even if these activities will not entirely meet his/her "leisure" needs.
Finally, accept that you will probably never completely extinguish the behavior
without having it replaced by another self-stimulatory behavior. Self-stimulation
is common to all humans and serves an important purpose.